One family's nightmare: R.I. children's mental-health system is broken

Saturday

Aug 22, 2015 at 11:15 PM

Affluent or poor, young people face many obstacles to receiving proper services — services that could prevent worse problems later in life, for them and society at large.

By G. Wayne Miller Journal Staff Writer

Part one of two

PROVIDENCE, R.I. — Skilear was not yet 4 when she began to feel anxious. "She had a lot of worries for such a young brain," says her mother, Janai Derrick. Janai and her husband, Timothy Isles, placed their daughter in counseling.

Three years passed and Skilear's mental health did not improve. She enrolled in kindergarten, which brought heightened anxiety for the little girl — and her whole family, which by then included baby daughter Paitton.

"Honestly, it was chaos," says Janai, 31. "A kid that should be happy and go-lucky was miserable and withdrawn, always anxious. You could literally see it in her aura. I was burnt out. We didn't have the coping skills because we didn't have services."

Circumstances were compounded by the family's marginal finances, and the mental illnesses with which Janai and Timothy, 36, both have lived since childhood. And Paitton was developmentally delayed and exhibiting symptoms of attention deficit hyperactivity disorder, or ADHD.

The stress overwhelmed everyone.

"It was absolutely terrible," says Janai. "Definitely not what I pictured growing up thinking, 'I'm going to be a mom and have a family.' We didn't look like a family, we didn't operate like one. Nobody was really ever happy. My depression got worse because I thought I was failing as a mom. The worse I got as a mom, it only exacerbated the issues with them. So it was a really self-defeating cycle that dragged us further and further down."

What followed was a frustrating and bewildering journey through multiple programs, practitioners and services — a journey fraught with the same fragmentation, inefficiencies and underfunding that characterizes much of Rhode Island's troubled adult mental-health system.

And while the story of Skilear, Paitton and their parents has its distinctive elements, the essentials are symptomatic of widespread problems in the children's behavioral health-care system in Rhode Island. Affluent or poor, young people face many obstacles to receiving proper services — services that could prevent worse problems later in life, for them and society at large.

"Even more than in the adult system, the children's system has suffered from funding cuts and has in many ways been dismantled," says James McNulty, head of Mental Health Consumer Advocates of Rhode Island and Oasis Wellness and Recovery Centers.

"Not funding the child and adolescent behavioral health-care system is one of the things that has led us to our current situation, with so many people living with mental illness incarcerated at the ACI. Wordsworth said: 'The child is father to the man.' This is certainly applicable to the way we do child and adolescent mental health in Rhode Island."

Benedict F. Lessing Jr., president and CEO of Woonsocket's Community Care Alliance, which provides a variety of services to children and adults, agrees. Lessing also speaks as acting head of the Rhode Island Coalition for Children and Families, an advocacy group that represents nearly 30 organizations that strive to deliver quality care, despite the hindrances.

"I think I can categorically say that there really is no kids' system in the sense that there's been no systemic or strategic plan in terms of how are we going to address the needs of children with mental-health concerns," Lessing says. "It's shameful."

'A low priority'

Dr. Gregory K. Fritz, who can rightly be called the dean of Rhode Island children's psychiatrists, sees firsthand the systemic issues described by McNulty, Lessing and others.

"Children's mental health is a low priority," says Fritz, president-elect of the Washington, D.C.-based American Academy of Child and Adolescent Psychiatry (AACAP). "It's overshadowed by adult mental health and by 'med-surg' problems, even though a lot of those medical and surgical problems have big behavioral pieces to them. It's a stepchild, if you will."

"There aren't any kids in the state who have diabetes who aren't getting treatment," Fritz says. "And there isn't a big reservoir of untreated kids with cancer. But there is a huge reservoir of kids with untreated mental illnesses."

Fritz sees other impediments, including a shortage of psychiatrists and other clinicians, which leads to long waiting lists — weeks or months — for programs that have proved effective. This is a national issue as well.

"The work force is minuscule compared to what is needed," says Fritz. "There aren't enough psychiatrists, psychologists for kids." Nor therapists.

According to the AACAP, Rhode Island has 42 child psychiatrists delivering direct patient care. Fritz estimates that 15 to 20 more are needed.

Stigma and misunderstanding also are factors, says Fritz, who holds leadership positions at Rhode Island Hospital, Hasbro Children's Hospital, Bradley Hospital, The Warren Alpert Medical School of Brown University and the Bradley Hasbro Children's Research Center.

Many parents and other responsible adults, Fritz says, "want childhood to be a tripping-through-the-tulips kind of thing — a carefree period before the responsibilities of adulthood. They don't want to think of children as having all the issues that they frequently have to deal with."

As a result, he says, mental illness can go unrecognized and untreated.

Which can have lifelong consequences.

Pervasive problem

Nineteen percent of Rhode Island children ages 6 to 17 have "a diagnosable mental health problem," according to the 2015 Rhode Island Kids Count Factbook, which cited a study published in Pediatrics, the official journal of the American Academy of Pediatrics. That's nearly 28,000 children, based on the U.S. Census Bureau's population estimate of 147,014 total children.

Almost 10 percent — 14,407 children — have "significant functional impairment," according to Kids Count.

But more than a third of Rhode Island children "who needed mental health treatment or counseling in the previous year did not receive it," according to the organization, which referenced the federal National Survey of Children's Health.

Another national study documented a correlation between poverty and child mental illness. According to the Centers for Disease Control and Prevention's 2013 study "Mental Health Surveillance Among Children," children in households living below the federal poverty level ($23,550 annual income for a household of four) were more than twice as likely to be diagnosed with depression. A similar disparity existed for diagnoses of phobias and anxiety.

Janai Derrick gets that.

"Living in a really violent and negative neighborhood definitely doesn't help your mental health because of all the negativity that surrounds you," she says. "Poverty or low income really affects the services you're able to get because it affects the resources that you have available to get to appointments, to be able to reach out and find services."

The risks can be life-threatening.

"Suicide, which can result from the interaction of mental disorders and other factors, was the second leading cause of death among children ages 12-17 years in 2010," according to the national Health Surveillance report.

This is the sort of statistic that distresses behavioral-health professionals who have witnessed significant advances in their field during the last several years.

Says Lessing: "We now know a great deal about brain development. We should be looking at early-childhood mental health. We should be working with kids that are in Head Start and before, and working with them and their parents."

Says Fritz: "Prevention, which is very possible in childhood — getting problems when they're small and manageable and haven't really taken over the character of the child or become the 'big monster' to deal with — it's much easier.

"If you treat them when they're young and the problems are relatively easy and you address it within the family, the biggest benefits are down the road when the child is able to reach their potential and be a productive adult member of society. ... Children's brains are so much more malleable than adult brains."

Scrambled services

During his long tenure as president and CEO of South Shore Mental Health Services, once headquartered in Charlestown and now part of the Lifespan network, Richard Antonelli witnessed a transformation in Rhode Island's public mental-health system for children.

It was not, in his view, a positive development.

Children's mental-health services were once overseen by the state Department of Mental Health, Retardation and Hospitals, predecessor to today's Department of Behavioral Healthcare, Developmental Disabilities and Hospitals, which serves only adults. In the 1980s, control of children's services was moved to the DCYF.

The motivation, according to Antonelli, past president of the Mental Health Association of Rhode Island: "To save money. That was it, money."

But subsequent cuts to DCYF, combined with that agency's later gross mismanagement, left many children and families with behavioral health-care issues in peril.

In part to correct that, Governor Raimondo last month announced a radical overhaul of the agency, whose performance had become what she described as "extremely dysfunctional" under the two governors, Lincoln Chafee and Donald Carcieri, who preceded her.

"It's just not right," Raimondo said. "Every kid deserves a chance. These families and kids are facing unbelievable struggles. The way we've been delivering services — we've just been letting them down."

Elizabeth Roberts, secretary of the state Executive Office of Health and Human Services, which has jurisdiction over DCYF and BHDDH, said the overhaul will address fragmentation, among other issues.

"Rather than having somebody interact with five different community-based agencies and [DCYF]," she said, "we will create a structure that wraps those services around the family in need — and even better, supports them before a crisis."

Antonelli and others favor returning control of all mental-health services to BHDDH. That is an option Roberts said she will consider in addressing another major problem: the cumbersome process of making sure services continue when a child reaches the age of 18. The maze of paperwork alone frustrates many young people, who already are dealing with a lot.

And some programs that have proven successful have been curtailed by DCYF budget cuts. Among them is one run by The Providence Center for people in their late teens and early 20s who have been in foster or residential care and are about to become responsible for their own health care, housing and employment.

"In our transitional-living program, seven years ago we had 21 clients and now we're down to seven," says The Providence Center's Allison Bernier, director of Care Integration.

"We see kids graduate from the DCYF system and then they sort of disappear for a little bit and then they end up in homeless shelters and not in the best places, at the ACI," says James S. Pinel, the Center's associate vice president of Child, Family and Adult Outpatient Services.

"That's a major priority for us: that whole transition of care," said Roberts, who plans "to get departments coordinated and not have somebody at age 18 fall into some hole somewhere that they have to find their way out off and find their way to a new set of programs."

System in pieces

As their children's mental health worsened, so did Janai's and Timothy's.

They sought treatment for themselves and Skilear and Paitton, with some success, but negotiating the state's patchwork system of care was overwhelming. No one practitioner or agency they found could address all of the health, education and housing issues they faced. Communication between providers was poor. Potentially effective programs had limited enrollment. Bureaucracy repeatedly frustrated them.

"Anything can happen in the hierarchy of paperwork and computers," Janai says. "Some of the programs that you get into are in such high demand and the waiting lists are so long. If your insurance gets disrupted and you get bumped, you obviously can't pay out of pocket for the two months it takes to get the problem fixed. So if you get knocked out, you have to start all over again. You have to reapply to prove you're eligible."

Twice, the children were placed by DCYF in temporary foster care. Skilear was emotionally abused during one placement, Janai says, and after jumping out of a second-story window in an attempt to escape, was admitted briefly to Bradley Hospital.

Along with her daughters, Janai qualified for state-run RIte Care insurance coverage while Skilear and Paitton lived at home — but when DCYF placed the children, her coverage ended. She could not afford her medications, so she suffered.

"It was horrible," Timothy says. "They are taking away the essential life services that you need to either, A: gather the skills to get them back or, B: hold on to your mental security long enough to be able to rebuild. Quite frankly, I think that is counterintuitive and counter-productive to the goal, which is reuniting the family."

Finally, relief

Timothy and Janai say they got lucky early this year: They found Family Service of Rhode Island, a nonprofit social-service agency headquartered on Hope Street in Providence. Family Service provides a variety of help, including therapy, medication management and home visits. It is a member of the advocacy group that Benjamin Lessing heads.

Most importantly, they were assigned a case manager — a social worker who has been attentive to their needs and who gets results, say Janai and Timothy.

"She has access to resources that we don't know how to find that she connects us with," says Janai. "She's really like the glue in the center: anything we need we can go to her for and somehow she can give us assistance and actually get it accomplished. Honestly, getting a case manager made all the difference in the world."

As summer nears its end, with Skilear, now 11 and Paitton, 8, the family is in a better place.

"Because of the work that we have done and what thankfully has been available to us, we're getting healthier," says Janai. "We're not that all-American family just yet, but we're working on it."

Says Skilear: "We are in the middle-ish."

In the middle of a long journey nearly made endless by a broken system.

gwmiller@providencejournal.com

(401) 277-7380

On Twitter: @GWayneMiller

Part Two on Monday: A children's mental-health success story.

Mental Health in R.I. — a series

Steep hurdles for people of color seeking relief from mental illness

July 12, 2015

http://www.providencejournal.com/article/20150711/NEWS/150719986

Katie's Story, about a woman living with anxiety and bipolar disorder, Day One

April 26, 2015

http://www.providencejournal.com/article/20150425/NEWS/150429577

Katie's Story, Day Two

April 27, 2015

http://www.providencejournal.com/article/20150427/NEWS/150429550

Katie's Story, Day Three

April 28, 2015

http://www.providencejournal.com/article/20150428/NEWS/150429357

Creativity is at heart of coping in R.I.'s innovative PeaceLove Studios

Feb. 8, 2015

http://www.providencejournal.com/article/20150213/NEWS/150219601

Incarcerated: Hundreds who need mental-health care forced into ACI

Dec. 14, 2014

http://www.providencejournal.com/article/20141213/LIFESTYLE/312139935
As public system changes, many mentally ill residents pay the price
Oct. 26, 2014
http://www.providencejournal.com/news/health/20141025-as-public-system-changes-many-mentally-ill-residents-pay-the-price.ece